Disability and the Practice of Wonder
In her landmark volume Freakery: Cultural Spectacles of the Extraordinary Body, Rosemarie Garland-Thomson argues that the Enlightenment heralded a striking change in the way European and American thinkers conceptualized disability-away from earlier notions of disability as a marvel or wonder, toward a discourse of normalcy and deviance that framed disability as an aberration. Might returning to wonder offer us a path to approach disability differently? This article probes two risks: the way treating disabled people as wondrous can be used to objectify, turning disabled bodies into sites that matter because they spark feeling in others; and the way a call to experience wonder can figure certain feelings or modes of perception as prerequisites for a meaningful life. Considering the way that disabled writers narrate our own experience showcases wonder's possibilities: new orientations toward beauty, care, interdependence, and a sensuous engagement with the complex present of disabled people's lives.
Wonder of Wonders: How Nonstandard Lives Help Us to Remain Human
Wonder is a gateway, not a machine. It is not something that can be functionalized for the purposes of education, moral uplift, or humanizing medicine. The things and experiences that evoke wonder today have their own history. Inhabitants of the Western developed world, for instance, have been taught to wonder at the power of science to control nature and at the ingenuity of the scientists and technicians who have invented the techniques of science and technology. This article examines what wonder tells us about our grasp of the human, and also why the language of wonder sometimes jars within the constraints of modern, liberal, scientifically inclined public discourse. The author suggests that privileging wonder at the appearance of the nonstandard human body is important for the lives of disabled people and also as a corrective force to ensure that the form of wonder that dominates the modern developed West-wonder at our own powers of scientific description and medical remaking of the human-not become inhumane.
Donning the : Enchanting the Ill and Pregnant Body in Art
The hospital gown is a particularly charged article of clothing. For the chronically ill and disabled, the ritual of donning the gown signals a change of identity from "person" to "patient." This essay chronicles the metamorphosis of a standard hospital gown into a work of wearable art that showcases the glittering pregnant body. Rather than thinly shrouding nakedness, this gown reveals the nude, gravid, and disabled figure as not only worthy of artistic concentration, but full of wonder and enchantment. This work emerges from the author's decade-long collaborative practice with her sister, Devan Stahl, as her experiences living under the medical gaze are compounded in the pursuit of motherhood. The Imaging Gown takes up past and present visual cultures of medicine and re-presents them with sublime sensibilities that affirm the patient perspective.
My Ancestors Were One-Celled Organisms
This first-person essay explores wonder in the medical encounter from a patient's point of view, considering times when medical technology has given the author insight into her body and the wonder that has been evoked by these experiences. Two medical encounters are detailed: one in which post-polio vocal cord weakness was explored using a miniature camera, which evoked a sense of wonder at the process of evolution; and the second in which an MRI of the author's skull became a memento mori. The author reflects on the long processes of genetic mutation from single-celled organism to human being, and on the devolution after death to food for bacteria and insects.
Can We Flourish Amid Our Losses? Transformative Openings in Old Age
This essay is an exploration of the transformative possibilities open to us through aging. Transformative openings are described using psychologist Abraham Maslow's notion of "peak-experiences," which are both normal and common for humans. Popular cultural stereotypes of aging are examined and discarded. The experiences of loss, especially diminishments of mobility, dexterity, and mental acuity, are characteristic of aging. It is argued that these losses present novel transformative openings, especially when death and aging are viewed in dialectical relationship.
The World Turned Upside Down: Wonder, Disgust, and the Alienation Effect
History shows alarming shifts in the way that people with intellectual disabilities have been regarded. Locke doubted whether they could be counted among the human, while Rousseau hailed them as unspoiled children who could help us be better; the eugenicists despised them as perpetuating "feeble-mindedness," while the religious praised them as holy innocents. Throughout, however, they have been seen metaphorically, as symbolic figures who incite hatred or inspire wonder, but rarely as real people. This article, written by the father of a young man with severe disabilities, rejects such thinking. The author explains how intellectual disabilities work as a Brechtian "alienation effect" and challenge our core system of values and explores how they make us reconsider much of what we take for granted.
People in Drawers: Finding Wonder in the Archives
This article discusses relics housed in the Ringling Circus Museum in Sarasota, Florida: photos, works of art, newspaper clippings, performance records, and scrapbooks of mostly 19th- and 20th-century circus performers with varied, often "unusual," bodies that have been all but forgotten. Encountering these artifacts left the author wonderstruck-a feeling sometimes so abrupt that it heaves us into the conscious presence of others-and left him with a string of complex emotions. In this article, the author attempts to recreate the affective experience of wonder as the performers' images were lifted before him, and to reflect on the ways disability prompts that affective experience of wonder and functions in moral development.
Confronting the Medical Leviathan: Reading a Report from the Front Lines
This essay discusses how two physicians in Britain's National Health Service describe and analyze the conditions of their work: how algorithms and protocols structure the care they can provide and create the dilemmas they and their patients face. In these issues, the NHS is a canary in the mineshaft of contemporary Western health care. NHS practices are understood as how states and state-like entities, Leviathans, seek to render their subjects legible; in this instance, to make both physicians and patients transparently visible to surveillance and administration by standardizing medical work and patient need. Physicians respond by engaging in workarounds, finding ways to provide care despite systemic restrictions.
Helen Keller and the Burden of Wonder
This essay examines the concept of "wonder" in relation to the life of deafblind author and activist Helen Keller (1880-1968), who was often billed in popular media as the "Eighth Wonder of the World." For Keller, being known as a "wonder" was not always a positive attribute: the term, far from being neutral, conceals the uneven power dynamic between the one doing the wondering and the one who inspires the wonder. Using excerpts from a range of sources-from Keller's second autobiography The World I Live in (1908) to hotelier Conrad Hilton's autobiography Be My Guest (1957)-the author argues that Keller was never a passive object of other people's wonder but a proactive agent of her own wonder-making. In the end, Keller endured the burden of being known as the "Eighth Wonder" while also resisting its cumulative effects.
From Wonder to Anger: The Showman and the Slave
Wonder exalts its object. Can it also degrade? This question was a central interpretive tension guiding the author's archival research and analysis when he set out to write his first book almost 30 years ago, about a 19th-century woman who was simultaneously degraded-for her race, her disability, her old age, and her enslavement-and lionized for the stories she had to tell and for the symbolism of her very existence. The author reflects on how his fascination with the story he was recovering in the archives reflected his "positionality," or the ways in which his social identity shaped his understanding. A reading of a recent collection of poems by Bettina Judd reimagining the same story helped clarify both what his own standpoint allowed him to see, and what he missed.
The and the Virtue(s) of Wonder
With reference to imagery from Matthias Grünewald's masterpiece, the Isenheim Altarpiece, this essay considers how health-care practitioners especially- but all of us in practice-can learn to wonder in a way that does not objectify the differently abled but instead honors them. Wondering at the images in Grünewald's work requires humility, curiosity, patience, compassion, and grit-virtues that all health-care professionals would do well to cultivate.
Wonder with Care: How "Crip Participation" Engages Activism
This essay explores how the authors' curatorial process has roots in wonder: how it is one of inquiry, beginning and ending with open questions. The authors describe how their "crip" curatorial methods can be used to refuse extractive practices that might result from a disengaged wonder and to generate exhibitions that hold both the viewers and the artists with the care necessary to move passive viewing into a reciprocal engagement that can lead to an activist turn. These curatorial methods acknowledge and embrace medical professionals as potentially fellow disabled people and view them as current or potential allies. Through the participatory nature of the art in the exhibitions, the gallery becomes a space of encounter, one that creates support structures for people to build out from their individual, personal experiences and to become part of something shared across people, objects, memory, and experience. However, this shared space is not intended to collapse into ever fully knowing or understanding another person's experience. Critically, it is also a shared engagement where access to someone else's story, or body, or memories is not freely granted. Crip curation takes seriously the intentional omissions of both viewers and artists that upend not only what we get to know but how we get to know it and emphasizes that what we get to know and how we know it necessarily remains incomplete; viewers and artists alone retain full access to their own experiences.
"Control Freaks": Evaluating Concerns of Ableism in the Perinatal Environment
This essay explores the relationship between the modern era's impulse toward control and the practices of family planning and disability-selective abortion. Drawing from experiences as a pediatric palliative care physician working within a busy fetal care program, as well as the social theory of sociologist Hartmut Rosa, the author argues that there is an unresolved cultural and professional conflict within perinatal medicine between maximizing control of the future and maximizing a culture of anti-ableism.
Scans and Prints
This essay reflects on occasions when images of the author's body stirred wonder and challenged the author's understanding of her relationship to her body. Wonder is not a sentimental or romantic feeling, but an intermingling of both admiration and fear. Wonder is perhaps closest to awe, which has connotations of both reverence and terror. Wonder holds together both the negative and positive emotions that awe once elicited. Finding wonder in your own body, therefore, can be both a fearful and exhilarating experience, one that demands a kind of reconstitution of the self, since the body that was once taken for granted has now become alien.
People on Floors: Creating Relics Out of Medical Waste
This article examines three debates over the nature of human specimens: anatomical dissection in Victorian Britain, the question of ownership over Henrietta Lacks's cells, and recent debates over how to treat remnants of abortion. These cases reveal that specimens are deeply connected to human persons and should be considered with a particular kind of care. The author uses Andrew Solomon's concept of horizontal kinship to support reframing medical waste as "relics"-objects of veneration interpreted as revealing truth about the human experience. Envisioning medical waste as relics allows us to wonder at the ability of the body to provide transformative knowledge, which leads to practices of appreciation to honor the sacrifices of the body.
Koan: Leonard laughing
Leonard Norman Primiano (1957-2021), esteemed folklorist and ethnographer of religion, relied for 16 years on assistive technology to speak. Described by an anonymous reviewer as "our ever-vanguard of thought, work, and ethics, not to mention creativity, funkiness, and joy," Primiano brought a reverential delight to his vocation and inspired a reverential delight in return. This essay reflects on Primiano as a radiant example of the capacity for wonder.
Telling Time: Patient Experiences of Temporality in Brain Tumor Comics
This article explores three different comics by creators with brain tumors: Rick, written and drawn by Gordon Shaw; Going Remote, written by Adam Bessie and drawn by Peter Glanting; and Parenthesis, written and drawn by Élodie Durand. It examines how the affordances of the comics medium enables the creators to present an experience of subjective time that is multiple, diffuse, and contradictory, in contrast to the regular apportioning of time via calendars, schedules, and pathways essential to institutional neuro-oncology. The question of time here is significant because the side effects of brain tumors can include blackouts, seizures, and periods of extreme fatigue, during which the experience of time can be significantly disrupted. The title of the article therefore evokes a temporal duality: on the one hand, it refers to the common phrase used to describe what clocks do, as well as our ability to read them; on the other hand, it speaks to one of the most important qualities of graphic medicine, which is that it allows patients dealing with medical or health issues to tell time differently. The article explores the representation of personal time in Rick, social time in Going Remote, and lost time in Parenthesis.
Of Jellybeans and Morning Glories
The author invites us to accompany her from sun up to sun down as she shares the routines that create a sustaining environment for her family. She describes the assistive devices, modifications to her home and vehicle, and the strong care network that enable her to mother, and to celebrate the wonder of living and thriving with her daughter.
Moral Diversity for Medical Trainees
While the proliferation of diversity, equity, and inclusion (DEI) initiatives among medical schools and residency training programs has provided important benefits of demographic and experiential diversity among medical trainees, there has not been a similar emphasis upon the importance of moral diversity in medical training. Enhanced attention to the importance of moral diversity and the centrality of conscience to medical practice might allow trainees to better interface with the morally diverse patients they serve, learn important virtues like humility, patience, and tolerance, and deepen their understanding of and appreciation for alternative moral viewpoints among their fellow practitioners.
"First, Do No Harm?": Metaphysical Harm and the Need for Iconic Perception
"First, do no harm" has been cited so often as the fundamental principle of medical ethics that the entailed harm appears self-evident: intentional or unintentional physical harm. This article makes a case for a different kind of harm that physicians can commit against patients: metaphysically harming them by reducing them to mere objects to be fixed or manipulated, instead of persons to be known. Drawing on the history of medicine, theological reflection, and clinical practice, the author compares two ways of regarding the patient: (1) the medical dissective gaze, which knows the patient by mentally cutting her up and reducing her into parts; and (2) iconic perception, which encounters the patient as a living icon. While the medical dissective gaze describes an important dimension to scientific medicine, treating a patient purely as a medical object defaces her human personhood. To address and prevent these kinds of harms, the author proposes that regarding the patient with iconic perception fosters wonder and reaffirms the patient's humanity.